MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Nell's picture
Replies 1
Last reply 7/5/2015 - 9:26pm
Replies by: arthurjedi007

Just kind of bummed out...have only been on tafinlar/ mekinist combo 13 days and already the last 2 days I have been flat on my back with over 102 fever. I have had this sick tired all week...the lie down kind of tired...Hoping the dosage can be adjusted and I don't have to stop altogether....anybody have their dosage adjusted? Thanks for the chance to vent a bit....this disease sure gets scary at times.....

One voice can make a song; one life can change the world.

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Anonymous's picture
Anonymous
Replies 10
Last reply 7/5/2015 - 5:34pm
Replies by: Ed Williams, jamieth29, Bubbles, Anonymous, yazziemac

Just curious if any one has had radiation following a radical lymphadenectomy of neck nodes? I noticed that it is not even a treatment option on this website.  I was recently diagnosed with melanoma and have had surgery one month ago to remove approximately 30 nodes in my neck area (primary melanoma on my nose).  They said 13 nodes were positive out of 30 for melanoma.  They said it is too soon to start any systemic therapy and want me to wait until I heal further from the sugery before I start radiation.  Radiation likely to start 6-7 weeks following surgery.  I am BRAF neg.  Otherwise healthy, although this surgery has kicked my butt.

Thank you for any help you can offer.  Something just doesn't feel right.

Mike

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Hi, 

Finished the Ipilimumab treatment successfully 3 years ago. Now - high PTH and enlarged parathyroid. Anyone experienced this side effect and if so - what is the treatment?

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Anonymous's picture
Anonymous
Replies 4
Last reply 7/5/2015 - 2:14pm
Replies by: Anonymous, casagrayson, Wader, Kim K

Hi, 

We know Dr., Steven O'day moved from the Angeles Clinic to Beverly Hills Clinic, but we are patients from the past and wish to consult with Dr. O'Day about a side effect that now appeared (a few years after end of Ipilimumab treatment). Does anyone know his email or where he is?

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RayfroMTN's picture
Replies 2
Last reply 7/4/2015 - 3:02pm
Replies by: arthurjedi007, tschmith

Hello all, first post on this wonderful site I found yesterday. I was diagnosed stage IV metastatic melanoma in April of 2014. During this past 14 months of course my family and my life has been turned upside down. Had a brain met surgically removed and then had 3 sessions of the newest radiation treatment on the bed of the tumor. Results come back Melanoma metastatic stage IV. We had a PET scan run and found nodule on my left lung, after Dr.s discussing situation the ping pong ball size Nodule was surgically removed along with the entire upper left lobe of my lung August , It to was melanoma, by now we have blood work and biopsy lab work return and I'm BRAF + my med oncologist decided we hold up on chemo for a little while as I was totally exhausted from the surgery. Then in December something happened to left lung it began to fill with blood and I gained 13 pounds in a couple days, we chose to go back in and repair or search out the problem, pumped the blood from the lung, mostly teaming with melanoma cells, I had blood transfusion to recover all the lost blood. Now by February, my Medical Oncologist decided it was time to try and slow this freight train down, so we started Chemo Zelboraf  pill form, took it for ab 10 days and side effects went wild, so we had to stop for 2 weeks, then restarted at lower dosage and we clicked along pretty well until last month June, We had a CT Scan done and it showed many lymph nodes expanding  in my chest area and 2 new nodules on same Lung. So my Dr. Decided we're going with Yervoy, had my first treatment June 22, went good, since I slept most of the way through it, that Benedryl through IV was a knock out punch. I go back on July 10 for blood work with my oncologist, in the mean time I had a CBC done at my regular Dr. They detected my platelet count up? So they sent info to my Onc. And next Friday we'll find out if that a prob or not? My 2nd Yervoy treatment is Monday July 13. The only effects I've had thus far from my Yervoy treatment has been Extreme fatigue, just kinda a sick feeling which is bearable. So just wondering anyone else at my stage in the game ready for Yervoy #2 and maybe what to expect. Yes there are some VERY scary side effects associated to this drug so I'm hoping Gods got this

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We are getting close to a course of action.  Charles Oncologist recommended surgically removing the mid lobe of the lung and all the lymph nodes.  Post surgery , starting Charles on Vemerafenib + MED.  If that course of action failed, immune therapy would be recommended.  Charles has had huge anxiety about the surgery - what if all the lymph nodes weren't successfuly removed, why go through trauma if this is not going to be 100% successful.  

We met with Dr. Daniels of UCSD as well, a melanoma specialist. Below is the recommendations from him that we are leaning towards - Brain MRI is scheduled for next week.  

Dr. Daniels does not think the surgery shoudl be done.  Below is his course of action:

Pembrolizumab (Keytruda) is likely the safest therapy of the immune modulation options. Response rates are between 40 and 50%
 
Ipilimumab (Yervoy) is the second for safety. If I were to use Ipi, I would ask a radiation oncologist to consider stereotactic radiation to one of the lung lesions. Data suggests combining radiation to Ipi enhances response. Response rates alone are between 10 and 15%. Unclear exactly how much radiation adds.
 
_______________________________________________
We will be composing a course of action letter to Dr. Kosty [ he is the head of Oncology at Scripps Green Hospital in La Jolla - this is where our health insurance is]  D. Daniels is a melanoma specialist at UCSD Moore Cancer Center in La Jolla [ we are going to see if we can switch insurance to use him, but we can't wait to start treatment until that happens, if it happens]. 
 
How do doctors react when you tell them you want them to follow an outside second opinion course of action?  I don't care about his feelings.....but to confirm, that is our patient right correct?
 
PLEASE CHIME IN ON ANY PART OR ALL OF THE ABOVE.  This forum has been a god send, we are on unchartered waters here and know that our decisons are life choices......serious flipping decisons.  
 
Thank you, 
 
Rita

 

Rita

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susan-scalp MM 2014's picture
Replies 1
Last reply 7/5/2015 - 7:41am
Replies by: Kim K

Good morning everyone. I found a new lump in my neck and had fine needle biopsy, negative. Now scheduled for PET/CT. My concern is I am diabetic on insulin and the facility won't do my scan if my blood sugar is not below 170 prior to scan.  I am eating high protein, very low carb and adjusting insulin per my Diabetes doctor instructions. Does anyone out there have any experience with this situation? As you may imagine it is causing me stress that this scan may be canceled and I know stress drives up blood sugar as well.

Susan

It is well with my soul!

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Joe.Pro's picture
Replies 2
Last reply 7/3/2015 - 9:38pm
Replies by: paz58, tschmith

My history:

Diagnosed with Acral Lentigous Melanoma April 2nd 2015 on bottom of my foot.  PET scan confirmed groin nodes were involved.  Surgery April 30th, removed tumor from foot and CLND right groin.  13 nodes were positive but the "deeper" nodes were free of cancer.  

Last week I went to have the skin graft surgery performed on my foot and upon closer examination by the plastic surgeon he biopsied a few spots that looked suspicious.  One of the spots came back positive which prompted a PET scan and brain MRI.  Results today revealed a tumor the size of a small grape and some disease in the lining of my lung as well.

I am receiving treatment at Dana Farber in Boston so I am seeing Melanoma specialists.

My original tumor did not reveal any of the BRAF mutations so I am BRAF wild type.

I am 34, wife and 4 young children - I have a lot of life in me and will do anything to watch them grow up.  That being said, I am curious to what you wonderful folks think I should attempt first for treatment.

My oncologist thinks the IPI/NIVO combo is my best bet to start and judging by the response rates I don't necessarily disagree with her but I am also intrigued by TIL.  

I would love all of your input and thoughts as I know many of you on this forum have a wealth of knowledge and expertise dealing with this horrific disease.

Thanks so much for your time and thoughts!

Joe

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Claudia Cornwall's picture
Replies 4
Last reply 7/4/2015 - 3:16pm
Replies by: kylez, paz58, tschmith, Mat

My husband's treatment with Pembrolizumab was successful, but he has become very depressed. The treatment did affect his thyroid and he does take synthroid now to replace what his body can't produce. According to recent blood tests, his thyroid level are now normal. However, he remains depressed.

It is so weird, you'd think he'd be very happy to be in remission.

Has anyone else run into this?

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jamieth29's picture
Replies 16
Last reply 7/3/2015 - 10:35pm

First of all i want to thank everyone for responding and thank the users who regularly post here. My name is Jamie I'm 36 year old male with 3 young kids. I have been reading this site for 2 months. Here goes, Diagnosed late April...lymphendectomy on left groin mid may, pathology came back with lymph node involvement in 5/13 nodes. Two weeks after surgery i had a in transit legion show up right by area where mole was. Had in transit spot resected. June 17th had ct scan that showed enlarged iliac node...positive biopsy so back to surgery i went. Surgeon removed 5 deep iliac nodes 3 were positive. Still 3c as it is still regional nodes. I am aware of all the numbers and stats for my situation as i feel I've done as much research as i could have since I've been diagnosed. I have ruled out interferon as we know the the odds of it working. I've narrowed things down to a vaccine trial at uw madison that i admittedly dont know much about other than its a cdx 1401 a cdx301 and the ny-eso-1. Or a trial of ipi/nivo in adjuvant setting. What i am asking for thoughts on is advice on the ipi/nivo as adjuvant. what statistically might be better? There are some results on ipi in adjuvant setting but not much on nivo. The kick in the ass is my local doctor has applied to my insurance company for ipi as adjuvant and they have verbally agreed to pay for it as 3c even though it is not fda approved. He presented trial data of the 951 patient trial of ipi as adjuvant. So my dilemma is if the 50/50 shot of nivo might be worth it. If i join the trial i have a 50% chance of getting ipi in the trial and would have to drive 3.5 hrs to get it when my local doc is 15 min away. I also am not 100% sure of implications for future use of nivo/ipi if i progress to stage4 but feel i need to take the biggest swing i can at this before it becomes metastatic to other parts of my body...if its not to late. Also just want to thank the knowledgeable posters here again and hope you realize how much you are helping people even though not everyone that has been recently diagnosed starts a post. The last 3 months i cant even explain the fear that has envolped me. The thought of leaving my kids has been almost to much for my mind to bear. The uncertainty of the future hurts but i know i will do everything in my power so that doesn't happen. It is such a powerless feeling to go from a fit hard working blue coller guy that never had a thought of dieing young. To staring death in the eye. Any questions for me i will answer quickly.

Thanks again Jamie

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cavsnut's picture
Replies 6
Last reply 7/4/2015 - 10:15pm

Some good news to share with everyone...had my one year scans today and groin lymph node ultrasound....everything came back normal...still stage 3a....probably the happiest day of my life

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Hi all,

I posted about a week ago regarding my Dad who was recently diagnosed with Stage 4 melanoma in his brain (3-7 mets) and lungs (one tumor).  He started whole brain radiation right away and will finish up the 10-day course of that tomorrow.  The doctors are hoping that this intensive radiation will shrink some of the brain tumors so that we can try gamma knife/SRS on the brain mets later (if they have decreased in size/number).  In any case, we are close to getting the BRAF test results and so I want to make sure that we know our next set of treatment options now that his radiation is almost done.  We did have one visit with Dr. Thompson at SCCA but, without BRAF, we weren't able to settle on a course/sequence of treatment.  And, after reading a number of posts in recent days, I want to ensure that we sequence the treatment as well as we can (especially given that his recent radiation round may help with efficacy of some of the drugs, some of these treatments need to be administered in particular orders per Medicare, some may have different efficacy given his "treatment naive" nature, etc.).  From what I understand, here are our options:

1)  If BRAF +, he should try to get on the Dabrafenib (Tafinlar) plus Trametinib (Mekinist) combo - which he can start right away.  Also, in order to prolong resistance from developing, he can take it episodically, correct?  Are there any other drugs or methods to hold off resistance?  Would you recommend starting with these drugs over ipi/the anti-PD-1 options or delay these to be used as a last resort?  From what I understand (and please correct me), these drugs show results faster than the ipi/anti-PD-1 options, he can continue to take steriods while on them (since he has a bit of swelling in his brain now), etc. - so those are some of the positives.

2) If BRAF -, he would have to try ipi first and have it fail before insurance (Medicare) would allow him to try Nivo or Keytruda.  Or, is there a way to get Nivo or Keytruda as a first line option (similar to what was just approved in the EU)?  Are any of the anti-PD-1 drugs more effective for brain mets?  Or, rather than going for single drug therapy, would it be better to try to get him right into a clinical trial for the ipi/nivo combo if he is BRAF- (given its higher efficacy but yet also worse side effects)?

What else are we missing?  We should hear about BRAF in a few days and so want to best understand our options and the pros/cons of sequencing - in order to be informed of whatever treatment comes recommended next.  What else do we need to be asking the doctors before we figure our treatment plan?  What other factors should we be considering?  For example, the doctors never told us that this whole brain radiation is a one-time deal in his lifetime - that would have been helpful to know upfront.  Had to make the call on that over only a few hours - very tough...   

Any advice and thoughts would be appreciated!  So helpful to have found this community...

Carrie 

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Steph001's picture
Replies 4
Last reply 6/30/2015 - 11:22pm
Replies by: Steph001, Janner

I have been recently diagnosed with superficial spreading melanoma. I had a mole on the back of my arm that my husband thought looked "funny". I also had a black, irregular mole on my temple so I figured I'd get them checked out. The mole on my temple was atypical and the one on my arm was melanoma. It's a Clark level II and the Breslow depth is .47. I see the doctor next week to have the tissue around the biopsy removed. 

I am now super paranoid and there are about 5 other "spots" that I've found that I'm concerned about. Is it common to have more than one primary melanoma at once? I feel like I'm being a crazy person! 

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Lindsay6694's picture
Replies 1
Last reply 6/30/2015 - 6:42pm
Replies by: Janner

Freaking out...Just diagnosed on friday with a clark level 2 melanoma on my thigh. after byopsy the depth is a .19 what exactly does this mean stage wise? I go in on thursday to have it removed, and they said i would just be monitored after removal.

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Polymath's picture
Replies 9
Last reply 7/3/2015 - 10:40pm

Something happened to me recently that I thought was worth sharing.  The short version of my long story is I have progressed through BRAF inhibitors, then yervoy, and was finally thrilled to be qualified for anti-PD-1 treatments.  After 4 infusions, I was feeling like this too was just not working, so thanks to this board's advice, I visted my melanoma specialist who practices several thousand miles away.  I'm always trying to stay one-step ahead with a plan B and only see the specialist occationally. The specialist recomended I discontinue Prednisone, get another scan right away, and then another after about the 7th dose and finally determine if it was doing any good.  Seemed like a good plan except when I got the results of that first scan soon after my 5th dose of Keytruda, they compared it to the prior scan when I came off Yervoy and because it did show progression, my regular onc said insurance would deny any further treatments and just like that, I have been yanked off Keytruda.  Since some would argue that anti-PD-1 takes time to work, I feel a bit cheated out of that opportunity.  The other side of that coin is that if I was not a responder, better to find out sooner than later. Of course the real big problem now is there are no other FDA approved treatments, so my only options going forward are trials.  Just wanted to send out this warning flag as this series of events really caught me by surprise.

 

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